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Tuesday, November 19, 2013

The Journey to Answers...

So I'm unsure how much to record here... detailing the lives of our children is a new problem my generation of parents faces. Before, the most you'd do was in baby books and journals, which could be burned if necessary, but now what we record is forever saved on some hard drive or cloud or archive that I don't understand. So if things disappear from here, I may be moving them to a more private location, or deleting them from the readily accessible web.

Our time in Billings was much more productive and overwhelming than I'd anticipated. We saw five different doctors in addition to the sedated ABR. So here are the results...

The ENT was great; tall and skinny so I guess he reminded her of the Mechanic since she let him pick her up. He cleared her for anesthesia and made sure her ears were in good enough shape for testing, since she had a cold. He mentioned a possibly dairy allergy... apparently dairy allergy can cause problems with hearing/ears without other strong symptoms like anaphylaxis. With her peanut allergy and eczema, other allergies may need to be considered, especially with the amount of dairy she consumes. Something to check into...

The audiologist was also terrific. She was able to do the sound booth test, which Ladybug failed, checked her tubes, which are functioning fine, and was even able to do the ear-bud test that we'd tried twice and hadn't been able to do. But, the results, while not as bad as the soundbooth, were still abnormal enough to justify doing the sedated test, so off we went to meet the anesthesiologist. Amazingly, Ladybug had only asked for milk once despite being NPO since 8pm the night before.

The hearing test was functionally normal. There is a mild hearing loss in a certain range of frequencies that does not impact communication, either the ability to hear voices or to learn to speak. So, we have no need of hearing aids; yay! They do want to continue monitoring her hearing because of the cranio, I suppose, and the partial hearing loss to ensure it doesn't progress into something that would affect her. But for now, her hearing is essentially normal. When I say her name, or give directions, or say a word, she is hearing me.

The question then is, why are we not on track with her communication? Why has that consistently been behind? When I asked the audiologist who performed her test, she told me that we don't know precisely what she is hearing, only that the sound is reaching her brain and the brain is reacting to it. She may be "misinterpreting" the sounds... whatever that means. I don't know if she can misinterpret to the point of hearing Charlie Brown adults, or if misinterpreting means she doesn't recognize the difference between my voice and the hum of the refrigerator. But, regardless, the problem does not lie in her ears. It's not a simple medical issue.

Physically, she did great with the anesthesia. They had to stick her at least four if not five times for the IV, which they finally got in her foot, but thankfully I wasn't there and she was already asleep at that point. They gave her Versed to chill her out before the procedure so they could get her sedated easier, and it was actually kind of funny. Poor little thing was sitting in this giant hospital recliner with her doggie Wubbanub, and her bunny, and her new hippo the surgery center gave her, and she started just falling over to the side. She'd get this glazed look, and then she'd rouse and try to babble or watch the cartoons, but then she'd glaze over again and start slumping. I told them I needed a prescription for that stuff to go home with! It'd sure make car trips a lot easier!

Our cranio clinic was the part that was a lot more than I'd expected, but that was a good thing. I feel confident that these people are going to do what is best for Ladybug without me having to hound them every step of the way, persuading them that something is going on with her. Our first visit was with a geneticist; despite the known genetic mutation, we'd never seen a professional in this field. He took a detailed family history regarding the cranio and any known developmental delays, and found it interesting that despite multiple cranio patients in the family, developmental delays have not been an issue for anyone except the first to have cranio, whose mother was told he was going to die because they didn't know anything about cranio or the surgeries to correct it. He wants us to come to a genetic clinic in his office to discuss further testing to search for other mutations that might explain the delays. He said even a small inversion can be enough to cause problems, and with one mutation already documented, the idea that others might have problems isn't far fetched.

The second visit was with the actual cranio surgeon. I was so pleased... while I didn't get exact answers, I got someone who is going to dig a little to figure out how best to help Ladybug. He had a great bedside manner with Ladybug, interacting with her to try to make her comfortable. The most refreshing thing was he said we had done the right thing as parents to push to keep her monitored when we felt something was wrong. It was so encouraging to hear that we've not lost our opportunity to fix any problems, and that he's looking past the textbook cranio of "obvious within a few months, surgery in the first year, or no problems" to consider the strange history of our family. He differentiated between "functionally closed" and closed sutures, which cleared my confusion regarding when sutures are supposed to close. They "close" around 2 years of age, but they are not "functionally closed." They are able to continue expanding until a person is in their 20's. So the question is going to be, are her sutures "functionally closed" or did they just close early but are going to continue allowing her head to grow. Right now, her head is at the 50% which is great, although I need to look back and see what her head circumference percentiles have been from the get-go. He is going to obtain the actual CT images rather than just the reports to decide for himself if he thinks there might be a problem with compression of the brain. Compression could cause delays, and would need to be dealt with. He's going to see her again no later than 6 months, sooner if he sees something in the CT that needs to be addressed more quickly. (This is the CT from this past January.) Depending on what he sees, she may need an MRI to check the brain itself. That means another sedation... sort of hoping that isn't needed!

The last visit, and the most overwhelming, was with a developmental pediatrician. She wasn't originally scheduled to see this doctor, but after hearing a more detailed history from us and interacting with her they felt she needed to be seen. I'd thought of trying to locate a developmental pedi after the practically normal hearing test of the previous day, but wasn't sure how I would find one being in Glasgow where we're short on actual pediatricians. I have no problem with family doctors, that's who cared for Ladybug for the first 18 months of her life, but when you get to this point you need something a little more detailed. Thankfully, that was worked out for me without me having to say a word! This doctor observed Ladybug while asking us some questions and reviewing her history, and then asked "has anyone mentioned the possibility of autism to you?" I cringed. Yes, they have, and I've pushed that possibility out of my mind and out of her charts. I was insistent that we not consider that until we dealt with the medical issues of hearing. But now that hearing is off the table... I couldn't push it away any longer. But I had to argue, just a little. She's affectionate. And Ladybug conveniently hugged the Mechanic's legs to prove my point.

And the doctor agreed, yes, she's physically affectionate, but not mind affectionate. Huh? Normally, I'm on top of the terminology in medical offices, but this one I'd never heard. She pointed out that Ladybug had yet to look either of us in the face, wasn't making eye contact, wasn't watching for our reactions. She admitted she'd only been observing for 5 minutes, but we couldn't argue... since birth, eye contact has rarely been there. It's so rare, it seems normal to me, at least for Ladybug. But when Turkey came along, I realized what a difference there was... she and I locked eyes at less than 2 hours old. And the eye contact is long, and frequent. I've noticed the difference, and I've tried to dismiss it... Ladybug's older and has grown out of eye contact. Or come up with some explanation. But apparently my explanations aren't right... she should be having eye contact, and she's not. We discussed her social interaction, or rather, lack of social interaction. And the doctor suggested we have her do a detailed developmental assessment, coordinated through the early intervention network but using the resources of a different region than what we're in. I thought we'd had quite a few assessments, but apparently this is different.

But, as devastating as just the mention of that word was to me, the doctor left us with hope. She gave us a task: don't give Ladybug anything she wants until she makes eye contact. She told us to get in her face, to move with her, until she looks us in the eyes, and then immediately reward that. She said if we catch this, whatever it is, at age two, we can teach her appropriate social interaction. If we wait till she's school age, it'll be too late; she'll be set in her ways and we won't be able to change her.